5 ms·

C) the database never gets hacked, or leaked, or otherwise exfiltrated

jopsen 8y ago
Even if there is a risk of this. It might be a risk worth taking. Edit: I don't know the specifics, but I sometimes wonder what good stats on more health records could do for future treatments.
- vertex-four 8y ago
  I wouldn’t intentionally place my health records out of my own control, because I have significant risk to my life if those records become public. Having certain illnesses and medical history is inherently political in 2018 - being trans can result in violence against you, talking to your doctor about STIs - even just prevention - can get you kicked out of your home, having medicated/treated schizophrenia will result in losing job/housing/etc opportunities. This isn’t going to change even if all those records become public in some way.
  - pimmen 8y ago
    But you also have a significant risk to your life if your doctor can't get to them and orders the wrong treatment. The risk of that happening to you is actually significantly higher than dying from a lot of pretty common illnesses.
    - michaelt 8y ago
      But you also have a significant risk to your life if your doctor can't get to them and orders the wrong treatment. Don't you think I'm in a better position to make that decision than a central government bureaucrat, given that I have my medical records and an incentive to protect my own privacy, and he has neither?
      - jbob2000 8y ago
        It's not good public policy for millions of people to make individual decisions about this. It's expensive for the healthcare system when there are a million different ways for it to access your data; some people bring in papers, some papers are on the other side of the country, some people have a USB stick, oh granny lost hers in a fire here's a photocopy from 10 years ago. It's just much more effective to manage these things at scale. You have incentive to product your privacy, but you don't have the means. Are you going to bolt a fire-proof safe to your basement floor and keep a backup in a storage unit? Are you going to store them on a disconnected harddrive and create backups every 3-6-12 months? Can we expect every Australian to do this? Can we expect everyone to want to spend hundreds of dollars to make this happen?
        vertex-four 8y ago
        So in my country, records are kept by the individual clinics, where I have GDPR rights over them and there isn’t a direct mechanism by which anybody but the clinic can access them. If I move clinic, there’s a process by which those records get moved with my consent.
        jbob2000 8y ago
        Yep, works like this in Canada. The problem is that each clinic implements a different record system, so someone needs to undergo effort to translate them when you switch systems. Also, I worked with OSCAR, one of Canada's biggest EMRs. It is written by a bunch of academics at a local university and is individually deployed on under-the-desk computers at clinics. It is full of security holes, the whole process of managing this system is. I get why you want rights over the medical records. You can still have those on a centralized system. Google and facebook are centralized and you have rights over them (in some jurisdictions anyways).
        Canada 8y ago
        Your province pretty much gets and retains your records because it's paying the bills.
    - vertex-four 8y ago
      Unless I’m unconscious, I can give my doctor permission to access my medical history from where it’s kept under my control, and give them a quick run-down in the meantime if necessary. I feel that I should have a right to choose between the risk of death when both myself and my emergency contact are unable to provide medical information to a doctor, and the risk of my medical history becoming publicly available - or even just available to the Government. Forcing the latter risk on me is, imho, unethical.
      - pimmen 8y ago
        And it would be much simpler if all you had to do was give them that authorization and they could retrieve your medical records in an instant, in the correct format for them to work quickly. If they have to order your medical journal from a completely separate jurisdiction, in a completely different format, and then import it that would take longer. If you require specialist care which is not available in your area this is an issue that comes up again and again. Not saying a centralized system would fix all the problems, or be perfect, but if it improves 1% of cases that's potentially thousands of people saved every year. That's a huge return for a very minor improvement.
        vertex-four 8y ago
        All at the low, low risk of creating e.g. a centralised Government database of trans people, or people with HIV, or whatever the next big scare is.
        pimmen 8y ago
        Yes, not saying it's perfect or couldn't be used for evil, just like the FBI isn't perfect and can be used for evil. We have to weigh the options and legislate in a way that mitigates the ways it can be used for bad things. Again, just a few percent in efficiency could mean thousands upon thousands of lives saved. I'm sure a lot of HIV positive people who were mistreated would've loved that.
        8y ago
- pimmen 8y ago
  I agree. In the US, the equivalence of a packed Boeing 747 of people die every day because of medical mistakes. It's the third leading cause of death. If you could reduce that number by 1% through this policy, that would mean thousands of people saved every year. In my opinion, the risk-reward analysis is clearly in favor of a centralized system.
  - TheSpiceIsLife 8y ago
    That’s actually a Grady point. Thanks for raising it.
shoo 8y ago
... or privatised and all the data used commercially

Even if there is a risk of this. It might be a risk worth taking. Edit: I don't know the specifics, but I sometimes wonder what good stats on more health records could do for future treatments.

vertex-four 8y ago
I wouldn’t intentionally place my health records out of my own control, because I have significant risk to my life if those records become public. Having certain illnesses and medical history is inherently political in 2018 - being trans can result in violence against you, talking to your doctor about STIs - even just prevention - can get you kicked out of your home, having medicated/treated schizophrenia will result in losing job/housing/etc opportunities. This isn’t going to change even if all those records become public in some way.
- pimmen 8y ago
  But you also have a significant risk to your life if your doctor can't get to them and orders the wrong treatment. The risk of that happening to you is actually significantly higher than dying from a lot of pretty common illnesses.
  - michaelt 8y ago
    But you also have a significant risk to your life if your doctor can't get to them and orders the wrong treatment. Don't you think I'm in a better position to make that decision than a central government bureaucrat, given that I have my medical records and an incentive to protect my own privacy, and he has neither?
    - jbob2000 8y ago
      It's not good public policy for millions of people to make individual decisions about this. It's expensive for the healthcare system when there are a million different ways for it to access your data; some people bring in papers, some papers are on the other side of the country, some people have a USB stick, oh granny lost hers in a fire here's a photocopy from 10 years ago. It's just much more effective to manage these things at scale. You have incentive to product your privacy, but you don't have the means. Are you going to bolt a fire-proof safe to your basement floor and keep a backup in a storage unit? Are you going to store them on a disconnected harddrive and create backups every 3-6-12 months? Can we expect every Australian to do this? Can we expect everyone to want to spend hundreds of dollars to make this happen?
      - vertex-four 8y ago
        So in my country, records are kept by the individual clinics, where I have GDPR rights over them and there isn’t a direct mechanism by which anybody but the clinic can access them. If I move clinic, there’s a process by which those records get moved with my consent.
        jbob2000 8y ago
        Yep, works like this in Canada. The problem is that each clinic implements a different record system, so someone needs to undergo effort to translate them when you switch systems. Also, I worked with OSCAR, one of Canada's biggest EMRs. It is written by a bunch of academics at a local university and is individually deployed on under-the-desk computers at clinics. It is full of security holes, the whole process of managing this system is. I get why you want rights over the medical records. You can still have those on a centralized system. Google and facebook are centralized and you have rights over them (in some jurisdictions anyways).
        Canada 8y ago
        Your province pretty much gets and retains your records because it's paying the bills.
  - vertex-four 8y ago
    Unless I’m unconscious, I can give my doctor permission to access my medical history from where it’s kept under my control, and give them a quick run-down in the meantime if necessary. I feel that I should have a right to choose between the risk of death when both myself and my emergency contact are unable to provide medical information to a doctor, and the risk of my medical history becoming publicly available - or even just available to the Government. Forcing the latter risk on me is, imho, unethical.
    - pimmen 8y ago
      And it would be much simpler if all you had to do was give them that authorization and they could retrieve your medical records in an instant, in the correct format for them to work quickly. If they have to order your medical journal from a completely separate jurisdiction, in a completely different format, and then import it that would take longer. If you require specialist care which is not available in your area this is an issue that comes up again and again. Not saying a centralized system would fix all the problems, or be perfect, but if it improves 1% of cases that's potentially thousands of people saved every year. That's a huge return for a very minor improvement.
      - vertex-four 8y ago
        All at the low, low risk of creating e.g. a centralised Government database of trans people, or people with HIV, or whatever the next big scare is.
        pimmen 8y ago
        Yes, not saying it's perfect or couldn't be used for evil, just like the FBI isn't perfect and can be used for evil. We have to weigh the options and legislate in a way that mitigates the ways it can be used for bad things. Again, just a few percent in efficiency could mean thousands upon thousands of lives saved. I'm sure a lot of HIV positive people who were mistreated would've loved that.
        8y ago
pimmen 8y ago
I agree. In the US, the equivalence of a packed Boeing 747 of people die every day because of medical mistakes. It's the third leading cause of death. If you could reduce that number by 1% through this policy, that would mean thousands of people saved every year. In my opinion, the risk-reward analysis is clearly in favor of a centralized system.
- TheSpiceIsLife 8y ago
  That’s actually a Grady point. Thanks for raising it.

shoo 8y ago

... or privatised and all the data used commercially